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February 28, 2009
Today is Rare Disease Day 2009
Today is Rare Disease Day.
Rare Disease Day: rarediseaseday.org/
I blogged elsewhere a couple weeks ago about how in working with the health system you do NOT want to be an outlier ( Life Outside the Bell Curve, a.k.a. The Limitations of the Evidence Base). I should have added you don't want to be interesting either. People with rare conditions are both. This often means that both they have no strong voice in developing and implementing healthcare systems and policies, and also that the typical healthcare provider isn't likely to have a strong sense of how best to help.
Rare Disease Day is designed to help promote both these concerns and find solutions. As the image above says:
- Strengthen one voice of patients
- Give hope and information to patients
- Bring stakeholders closer together
- Coordinate policy actions in different countries
- Get equity in access to care and treatment.
Here in the United States, your best connection to this initiative is through NORD.
National Organization for Rare Disorders: rarediseases.org
So what can you do? Tell people. Now, today, tomorrow, whenever. There will be another one next year, if you miss today. Just get the word out. Here are some ways you can join in with the activities going on.
Join the Facebook group.
Set your Facebook status to tell folks.
Contribute photos to the Flickr group.
Follow them on Twitter.
Tell folks on Twitter.
Go to their YouTube channel. Subscribe, and watch some videos.
Read the book.
The Voice of 12,000 Patients: http://eurordiscarebook.eurordis.org/
Bottom line? Tell someone.
Posted by pfa at February 28, 2009 12:47 PM